It’s been particularly quiet over here and while I’d love to say that we’ve been wrapped up in the holiday hustle and bustle, we’ve actually been wrapped up in something a bit more somber.
A few weeks ago on a regularly scheduled ultrasound our second baby was diagnosed with CPAM, congenital pulmonary airway malformation. A rare diagnosis of 1 in 30,000 but a diagnosis with a good outlook. Instead of normal lung tissue our daughter has a malformation in the lower left lobe of her lung. This tissue won’t function as normal lung tissue and it most likely will need to be surgically removed. Once it’s surgically removed, the life outlook is fabulous with no real restrictions or complications down the line. For this, I am so incredibly grateful. Terrified, nonetheless, but grateful beyond words.
We were scheduled for a follow-up ultrasound to see what the mass would do over the next two weeks. Sometimes they disappear altogether, sometimes they don’t. Her’s didn’t change. Her latest ultrasound revealed that the mass was still there and we are in the process of being referred to a pediatric surgeon.
Whenever you receive a diagnosis, or told there might be a problem, you automatically go through a process of “would-have,” “could-have,” and “what if’s.” There is no rhyme or reason to why a child develops CPAM and they stress that it’s nothing we could have prevented. This does nothing for a mother’s guilt. For my guilt. Immediately thoughts of all my maintenance medications I take for Cystic Fibrosis crept into my mind. Was it one of those that caused this malformation? Was it the daily Dr. Pepper I have been treating myself to? Was it the lack of spinach I was eating? Or was it truly just luck of the draw. I don’t seem to be particularly lucky when it comes to genetic abnormalities.
Needless to say, I’ve been tired. Physically tired. Emotionally tired. Our days have been jammed with daily appointments: for me, for baby & for Emmie (she started twice a week speech therapy). And our nights are laden with quiet anxieties while we toss and turn pretending to sleep. The house and dog have fallen into the category of borderline neglect and an already hardworking husband has been picking up my slack without saying a word or heaving a sigh. Yes, these past few weeks have been hard on everybody.
All we can do at the moment is try our best to go about our daily lives. We’ll be surrounded by close friends and family for the holiday season and there’s nothing more healing than laughter and love.
2 Comments
My son had severe CPAM, if you ever need to talk to anyone, or compare experiences don’t be afraid to contact me. I don’t know how many late nights I spent online searching for answers before I found others going through similar experiences.
I’m so sorry. My first had something called CDH (congenital diaphragmatic hernia) a hole in his diaphragm leading to organs being misplaced and it inhibited his lungs from growing. It was very scary. I will pray for you tonight regardless of the outcome. I’m so sorry your family is experiencing this.